Monday, January 21, 2013

Changes, Inside And Out

For many individuals, change is an unpleasant proposition. Most folks generally strive to maintain stability in their personal and professional lives. Major life changes, such as switching jobs, suffering the breakup of a romantic relationship, or moving to a new location can cause tremendous amounts of anxiety and stress, and studies have shown that some major life events, such as divorce, can have a lasting negative effect on mental and physical health. The simple fact is, though, that a certain amount of change is inevitable, and quite often changes once feared turn out, in retrospect, to have been for the better.

Once, while working for a large corporation, I attended a three day symposium that focused entirely on how to deal with change from a business point of view. Since change is inescapable, the symposium leaders told us, rather than fearing and trying to avoid it, workers and organizations are much better served by anticipating and embracing the shifting circumstances that are sure to come. Sticking rigidly to the tried-and-true will sooner or later find a business, no matter how large or successful, facing an existential crisis.

Patients dealing with progressively disabling diseases like Multiple Sclerosis are often forced to navigate lives riddled with change. Some of these changes, the physical, are often abundantly obvious to the outside world. Others, the changes that occur within, which are necessitated by the patient’s need to cope with their changing physical circumstances, are often only perceived by the patient themselves, or those closest to them.

From the moment of diagnosis, change becomes a constant way of life for the stricken, and the uncertainties associated with a disabling disease only serve to amplify the anxieties felt by the patients suffering from it. The physicians call MS a heterogeneous disease, meaning that it can present quite differently from patient to patient. Be that as it may, no matter how the disease presents itself physically, psychologically all patients share a fear of the physical destruction that can be wrought by the disease, and the resulting life changes that may be forced upon them.

I can quite clearly remember the haze of confusion that engulfed me in the days and weeks following my diagnosis, a sense of befuddlement heightened by the fact that the simple act of diagnosis had forced a sudden, irrevocable change in my reality, a permanent alteration to my sense of self. Although my symptoms at that point were largely invisible, I knew that I now stood apart from the crowd, that the so-called problems that I grappled with pre-diagnosis were dwarfed by a larger one that lurked within me, one that had the potential to change my life in ways that were almost too terrible to contemplate.

Though my knowledge of MS at that time was quite limited, I knew from the moment of my diagnosis forward that my life would never be the same. Even as I vowed to fight the disease with everything I had, and consciously told myself that this hurdle needn’t be an insurmountable wall, the research I was obsessively doing to educate myself didn’t paint quite so confident a picture. Yes, many patients were able to fend off significant disability for years and sometimes even decades, but others found themselves caught in the jaws of an insatiable monster, their lives twisted in ways they once thought impossible. Deep inside I knew that waves of changes were coming; it was just a matter of how destructive they would be and how fast they would crash ashore.

Indeed, my life now, just about 10 years later, bears little resemblance to the one I lived on the day I first noticed my right knee buckling ever so slightly with every step I took. A snapshot of my existence taken just before my diagnosis compared to one taken at this very instant would reveal changes so dramatic as to be almost surreal. The path from then to now is paved with incremental changes, each following a logical progression, but as I travel down that path the sum total of those changes seems anything but logical.

Through conscious effort I’ve managed to find a measure of solace and sometimes even contentment despite the effects of the disease, but not a day goes by that I don’t find myself at least once experiencing a terrific moment of shock at the toll the disease has thus far exacted. And then the knowledge that further changes are surely coming briefly crystallizes and compounds that shock, like a sudden chill stabbing through a drafty window frame, until with effort I force myself back into the relative safety of present. There is no getting used to the situation, rather, one learns to live with it largely because there is simply no other choice..

The physical changes inflicted by my disease (which now may or may not be MS, depending on which doctor you ask) that impact my day-to-day existence result from a toxic brew of symptoms. Muscle weakness, spasticity, fatigue, and a storm of other symptoms subtle and possibly nameless combine to grip me in their own diabolical custom-made vise. The progressive nature of the illness makes mentally coming to terms with any current state of disability a difficult proposition, since without some form of intervention it’s almost certain that more losses are to come.

Some patients are fortunate in this regard, and their disease plateaus at a certain point, stabilizing their state of disability, at least for a while. My disability, though, has thus far shown itself to be a constantly moving target. Trying to throw a psychological net around it so that it can be assimilated into at least a semi-permanent sense of self has proven to be an exercise in futility, like attempting to collect soap bubbles momentarily floating through the air. Change, then, has become a constant, and my life over these last 10 years can be charted by the mental and physical adjustments made to accommodate an ever transforming new normal.

Starting at day one and plotting my course to the present, walking with a limp progressed to walking with an ankle brace, and then to walking with a cane, as the distances I was able to travel grew ever shorter. Soon after came a power wheelchair, at first only used outside of my apartment, but eventually inside as well, much to the chagrin of my apartment’s walls, doorframes, and certain pieces of furniture. Walking is now reserved for the few clumsy and increasingly difficult steps between my chair and the bed, or my chair and my computer, or my chair and wherever else my chair can’t quite reach.

Of course, mobility issues are only part of the physical damage done by the disease. These myriad physical changes have made necessary alterations to my very definition of who I am and the qualities with which I define myself, as the disease methodically stripped away layer after layer of the superficialities that, over time, I had come to believe were the building blocks of “me”. The impermanence of what once seemed to be the foundational elements of my life speaks loudly of the tenuous fragility of what most consider their reality. In fact, the only permanence I can now count on is change, and living life in a state of constant physical flux requires ongoing psychological adaptation as well.

Unlike the changes to my physical self, which have been decidedly negative, many of the psychological changes that I’ve undergone have been surprisingly positive. I’ve certainly gained a sense of perspective, as many of the problems that vexed the healthy me have been revealed to be mere trivialities. Since the disease itself appears to delight at taking whacks at me, I’ve compensated by trying to be easier on myself, though self-criticism sometimes still does get the best of me. I’ve gained a tremendous amount of empathy for the downtrodden, victims not only of disease but also of circumstance, especially if those circumstances are not of their own doing.

Above all, I’ve learned the immense value of striving to stay rooted in the present, as the now, this very moment, is all we ever truly possess. The past is but a collection of memories filtered through a veil of years, and the future a place populated, courtesy of the disease, by some potentially very real monsters. Even if the now isn’t ideal, you do yourself a tremendous disservice by not attempting to fully occupy every moment. Far more than platinum, gold, or diamonds, time is the most precious of commodities, as it is irreplaceable and grows scarcer with each passing second. Used properly, the past is a tool that can best inform us how to make the most of the present, but it’s so very easy when faced with a present that is wrought with hardship to instead use the past has a sanctuary, attempting to blot out what is with memories of what was.

Though this may provide some temporary and sometimes much-needed comfort, ultimately one must find the resolve to seek the nugget of good that always hides somewhere in the present, even if finding it requires digging through layer after layer of psychological and spiritual pain. For each of us the composition of that glimmer of good might be quite different, but reason to hope, I think, is an essential ingredient. Once this labor is done, and the nugget of good uncovered, it must be held tightly and nurtured, and carried through the next moment, and then the moment after that.

Change is never easy, and the sea of change engendered by a crippling disease can be especially cruel. It can be tremendously difficult to not get caught in its currents and dragged under, and often the more one struggles the tighter gets the grip of its tides. Rather than wasting precious energy fighting the pull of the roiling ocean within, practicing kindness to self and making some effort to accept what is allows one to let go and float along the crests of the turbulent waves of distress, instead of fruitlessly struggling while being pulled under by them. This can be the key to finding respite amidst a raging storm, and ultimately making your way to calmer waters.

Attempting action through inaction is of course easier said than done, especially when the changes are coming hard and fast and it seems that there is no time to even take a breath, but taking charge of the raging elements within to create your own internal reality is the only way I know to soothe the savage psychological goblins of progressive illness. We must never stop fighting the disease, but in order to properly do so we must consciously give up the fight we sometimes wage against ourselves, and focus our efforts instead on the very real beast at hand.

You have summed up, for me, the psychological terror of progressive MS. The very word "progressive" is so cute... It is change, precisely, that is the challenge.

I consider myself fortunate the change, over the past 17 years, has been gradual even though inexorable. The inevitability of all those futures is indeed why being present in the present is so important. I really don't know how I would have coped with rapid change.

I don't know if the wilderness calls you at all but the TrailRider has meant a lot to me. Take a look at trailridertales.blogspot.com to see what I mean.

I enjoyed checking out the trail rider site, very interesting stuff. I must admit, though, that as a confirmed city dweller, the wilderness has limited appeal. Believe it or not, but I've never even gone camping. Of course, now that I'm too disabled to go camping, I regret not ever having done so. But I did do a lot of other things, like skydiving. If I'd have only known how limited my healthy time would be, I certainly would have done all kinds of other stuff that I let slide, like scuba diving and flying ultralights. Did a lot of snorkeling for a while, but came within a few feet of a 12 foot bull shark, which, though thrilling, also made ocean adventures seem a little too adventurous.

Is the trail rider available in the US, or is it currently only an Australian thing?

Well, change is the only certainty in life. I often think of MS as life on steroids, double entendre intended. The way that it's sort of like aging super fast and the feeling that any infirmity can occur at anytime. It's true for everyone just more true for us. I often feel that when my friends and family ask me "how you doing?" that they are unaware that they will either get sick and die or die suddenly too. Everyone is in denial, not just us. Like I said the human condition on steroids. I really enjoy reading your blog but its become more infrequent, another sad change. All the best to you, Marc

Yes, unfortunately my posts have become a bit more infrequent, in part due to disease progression, but also because I've been at this for about four years now, and don't want to resort to using filler just to put up a post. Been dealing with a lot of fatigue lately, though, which even makes thinking hard.

Indeed, I also sometimes feel the same as you when my well friends and family check in on me. I've already outlived at least two friends who were perfectly healthy and very upset when they heard of my diagnosis. Life has a mortality rate of 100%, and I think embracing your own mortality is one of the keys to living a maximized life. Our culture so celebrates youth, though, that there seems to be a collective state of denial when it comes to the fact that in 100 years the earth will be populated with all new people (assuming that in 100 years there will still be people).

Anonymous that's what I always tell my friends and family, I'm aging super fast. At age 57 I already have full blown osteoporosis. But that didn't make me sad. Marc I do not have 'progressive' MS but I do experience subtle changes. Today while going through a karaoke list for an upcoming party and trying out to see which song I can sing, I discovered that I no longer can sing. I was able to sing before. Now it comes out scratchy. That really saddens me. It was one of the few joys I was still able to enjoy after three failed marriages and grandchildren who have been abused while I remained clueless as to how to help them. There is nothing progressive about MS is there. :(

No, nothing progressive at all, at least not in the good sense of the word. Sorry that one of your few remaining pleasures was taken from you, and also terribly sorry about your grandchildren. People who abuse children should be given tremendously horrible cases of multiple sclerosis.

Is there no way to use your new scratchy voice to your advantage? Rod Stewart didn't do so badly with sandpaper vocal cords…

Hi Marc. I have traveled a very similar path with my MS. I went from a cane, to walker, to power w/c and would now be in a long term care facility if I hadn't found a foreign worker agency to provide me with a wonderful live in caregiver. The difference between us is that my journey to where I am now took 30 years, not 10! You have come to understand (and beautifully articulate) in 1/3 of the time it took me, the wisdom of a quote from Ghandi that has given purpose to my life: "Live life in the moment as if you only have today to live, but learn as if you are going to live forever."I love your blog, Mark. Thank you for writing it, even though I know it can be difficult and frustrating. You continue to inspire us all; I love how you're always learning and sharing with us your thoughts and insights with us. Be well, Deborah

Your gracious words are very much appreciated. The Gandhi quote is wonderful, I just wish it wasn't so hard to learn from the wisdom of others. Seems that so often we must undergo our own trials and tribulations before we can really live the words that so many wise people have spoken. I of course hope that the healthy people around me might learn something from my predicament, and perhaps some have. More often, though, it seems that folks going through similar experiences are the ones who get it, and we all find relief in the knowledge that others are feeling similar whirlpools of emotions that we are. Misery loves company, or all for one and one for all? The bit of both, I suspect. So many nuances, but that's what makes things interesting.

I've long had the saying "The only constant is change" as one of my two favorite saying sayings to shape my world view with the other being "The only normal is abnormal." I like the theory which describes nature and everything in it as a complex system. Within a complex system, each parts total impact on the entire system is difficult to ascertain. Our disease is yet another complex system within the complex system of nature. As humans, we really can't completely understand the truly complex. We merely try to manage it and it's impact on our lives. Whether it's looking at a forecast and deciding to take an umbrella because we think nature is going to throw rain at us or predicting how fast a marble will drop from our hand, we aren't "controlling the system." We predict, often with reasonable accuracy, but we don't control the systems. At a certain point when we've done all we can to try to control or mitigate the results, we just have to let fly that we which we hold in our hands for we can hold it no longer. I've been told that's when I might find acceptance.

Fantastically stated. Life is an ongoing exercise in chaos theory. As you say, the universe is immensely complex, far more so than our puny little minds can comprehend. We try our best, though don't we? So many explanations and attempts at knowing the unknowable, somewhere the cosmic pranksters are having a hearty laugh at our pathetic attempts at divining the nature of things. I like to think that the three-dimensional version of me may be sick, but in the 10th dimension I am the picture of perfect health. And in the infinite iterations of the Multiverse, every path I might have taken in this reality has been taken in some other. We are but self obsessed specks in a vastness that couldn't care less…

Dear Marc~Thinking of you always and wishing you well. I do sense how difficult your struggle has become and am all the more grateful to you for staying in touch with us and for continuing to share your insights with us. As you can tell from all of the comments from readers, we are eternally grateful to you.Best wishes to you,Roberta

Thank you, Roberta. Like I said to an earlier commentor, the struggle has become more difficult, but I also don't want to clutter the blog with posts just meant to take up space. I've always been one to prefer quality over quantity.

Funny, I didn't realize my increasing disability was making its way into my writing, but I suppose it's inevitable that it does. It would be dishonest to cleanse my reality from what I write, and I think most of this blog's popularity comes from the fact that I try to portray the unvarnished truth. At least my unvarnished truth.

as usual, i thank you for your honesty and insight. this sort of thing is very hard to talk to people about. it never comes up in conversation, and when people ask me how i'm doing, i know there is very little chance that they actually want to know. i have been dealing myself with a new downturn in attitude - your words/thoughts are of great value to me. thanks for that. and i love your photography. as a (former) street photographer myself, seeing your work inspires me to find some way to get back out there - as soon as this glacier in maine melts.

I have heard sad stories of how MS can be depressing to the whole family. It is not an easy situation for everyone. I have seen most elderly people suffer MS the hard way and most of them wish that they don't have it. Not only does the patient suffer but everyone in the family is affected. Thanks for sharing your post,

Oh, Marc, I am so very grateful for your blog, which I just discovered. This quote:

"but not a day goes by that I don’t find myself at least once experiencing a terrific moment of shock at the toll the disease has thus far exacted. And then the knowledge that further changes are surely coming briefly crystallizes and compounds that shock..."

Thank you, thank you, thank you for articulating what I go through every day. I have Alzheimer's and when I'm halfway to work and realize I left my lunch at home, or get an effusive greeting from someone I don't recognize who clearly knows me, I get the most awful feeling in my stomach, as though I'd swallowed a whole tray of ice cubes. I can't tell anyone, I'm terrified of losing my job, and that isolates me even more. Your blog is a mitzvah for me. Thank you.

It’s almost a magical moment in time when you realize there are other souls in the world that understand the deep tangled web of emotions that you sometimes can’t even make sense of yourself, much less describe. I knew others might exist, but now you have names. I didn’t want anyone else to feel the same, but it’s no doing of my own so the connection is without guilt and freeing. Thank you for tapping out the words that express feelings waiting to be explained. Thank you for arranging the words in the right order to describe the emotional pain endured as the me is stripped from myself and I. I feel validated.

I have been working on a blog to share my experiences that might help others with some practical decisions, but need the support and input of similar people to make it effective. I would appreciate visits, feedback and comments (especially on the "spare tires" posts) from anyone who can spare the time (pun intended). Thanks.http://climbingdownhill.wordpress.com/

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...